Global Palliative Care News Archive 2012, January - June

MW 259: The cost of hope and the price to be paid for refusing to accept death

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Within days ... [he] ... was dead. The unthinkable had happened. Unthinkable because his wife had not only refused to consider death as a possibility, but had done her best to stop her sick husband thinking about it in that light either. Returning home after a previous hospitalisation, he had taken out a pad and drawn a line down the middle, making a list of his possessions and deciding on paper whether they were simply to be thrown out or given to a named friend or relative. When she found him at the task, she yelled at him that he wasn't going to die and discouraged him fairly vividly from continuing his list-making. It wasn't the first time she had rejected, on his behalf, the possibility of dying when he seemed to be equable in the face of his own demise. It wasn't the first time that he had stiffened himself for a continuation of the fight against his cancer.

MW 258: Evaluating a patient's request for life-prolonging treatment: An ethical framework

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However, ethically challenging situations in the current healthcare climate are, instead, situations in which a competent patient requests active treatment with the goal of life-prolongation while the physician suggests best supportive care only. The argument of futility has often been used to justify unilateral decisions made by physicians to withhold or withdraw life-sustaining treatment. However, the authors argue that neither the concept of futility nor that of patient autonomy alone is apt for resolving situations in which physicians are confronted with patients' requests for active treatment. Instead, they integrate the relevant arguments that have been put forward in the academic discussion about 'futile treatment into an ethical algorithm with five guiding questions [see sidebar 'Ethical algorithm' (below)]. This algorithm shall facilitate approaching patients' requests for treatments deemed futile by the physician in a systematic way, and responding to these requests in an ethically appropriate manner. It thereby adds substantive considerations to the current procedural approaches of conflict resolution in order to improve decision making among physicians, patients and families.

Ethical algorithm

  1. Is there a chance that medical intervention will be effective in achieving the patient's treatment goal?
  2. How does the physician evaluate the expected benefit and the potential harm of the treatment?
  3. Does the patient understand his or her medical situation?
  4. Does the patient prefer receiving treatment after evaluating the benefit-harm ratio and the costs?
  5. Does the treatment require many resources?

MW 257: Last Moment Robot: "End of life detected"

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As a woman lies on a mattress on the floor, a small white machine attached to her outstretched right arm offers the following words: "I am the Last Moment Robot. I am here to help you and guide you through your last moment on Earth. I am sorry that your family and friends can't be with you right now, but don't be afraid. I am here to comfort you. You are not alone, you are with me. Your family and friends love you very much, they will remember you after you are gone." Jarred by the notion of someone dying in the company of a machine instead of loved ones (or at least other humans)? That's partly the point. The image "reveals the cruelty of life, lack of human support/social connections," [says] Dan Chen, who created the robot. "On the other hand, the robot becomes something that you can trust/depend on. It could give you the 'placebo effect' of comfort."

MW 256: Do not resuscitate orders "ignored" as doctors try to revive patients suffering cardiac arrest

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Other terminally ill patients were also given cardio-pulmonary resuscitation even though it was not in their best interests. The report investigated the care of 526 patients who had suffered a cardiac arrest in NHS [National Health Service] hospitals in England & Wales over a two-week period in 2010, and underwent a resuscitation attempt. In seven out of ten cases their care was "less than good" with a failure to recognise warning signs that they might arrest or to contact senior doctors. In one-third of these cases, poor care was judged to have contributed to the patient's death, the report by the National Confidential Enquiry into Patient Outcome & Death said. Worryingly, nine out of ten patients were never asked about their wishes should they suffer an arrest despite many having chronic disease and being at risk. Professional and NHS guidelines recommend doctors discuss with seriously patients and their families what to do in advance, including whether to put on their records DNACPR (do not attempt CPR).

MW 255: To resuscitate or not to resuscitate: Is that the right question?

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The reality is that it's our job as doctors to know the answer to this question every time a patient arrives on the hospital floor, and the task often falls to an intern working in the middle of the night. Unfortunately, trainees and even full-fledged doctors don't do a great job of having this discussion: We ask out of the blue, instead of placing the questions in the context of a patient's broader goals for her life and death. The way we ask about, and document, the end-of-life decision ("full code" versus "do not resuscitate (DNR)") creates a false dichotomy between doing something and doing nothing and fails to capture either the shades of gray in end-of-life care or the value of doing "nothing." We don't present a realistic view of the violence of chest compressions, nor the probability of surviving past CPR (in the elderly and chronically ill, less than five percent. It doesn't help that in the movies and television, a common source of information on CPR, characters who go into cardiac arrest are usually brought back from the dead with a few thumps to the chest. We present a daunting list of end-of-life options (CPR? Breathing tube? Defibrillator?) with little guidance on navigating it – the medical version, maybe, of the menu at The Cheesecake Factory. In our quest for patient-centered care, we forget it's still our job to frame choices and render them manageable.

MW 254: Don't dodge the difficult conversation, says new report

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A recent service evaluation led by the University of Hull and Hull York Medical School shows this doesn't have to be the case – particularly if clinicians have the courage to talk about death with their patients. The study ... describes data from two areas in Yorkshire where palliative care and heart failure services are fully integrated... Results show that integrated team work can reduce unwanted hospital deaths for heart failure patients, enabling many to die where they prefer. The study was led by Dr. Miriam Johnson ... [who said] ... "There's long been a perception that you can't talk to heart failure patients about death mainly because it's seen as difficult to predict when patients are close to end of life. However, our work shows that many heart failure patients are able to have honest discussions with their clinicians about their prognosis and appreciate the opportunity it provides for them to make plans and set their affairs in order." The team found that heart failure specialist nurses were able to recognise when patients were nearing end of life in the vast majority of cases and discuss the issues with them. Over two thirds of patients put plans in place for end of life and stated where they wished to die – most choosing to be at home – and their preferred place of death was achieved in 61% of cases. Over half of all patients accessed specialist care services compared to the 2011 National Audit Office figures of just 4% overall in the U.K., but Dr. Johnson stresses that the national figures are not completely reliable.

N.B. Source: Science Codex. Link to journal article unavailable at the time this issue of Media Watch distributed.

MW 253: New report captures the latest information on end of life care in England – the good and the bad

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"What do we know now that we didn't know a year ago? New intelligence on end of life care in England" pulls together facts and figures from a wide range of recent studies and surveys that provide an important insight into the pattern of death and dying in England. The report highlights areas where improvements have been made as well as where further action is needed to improve care for people who are dying. The publication is divided into 16 categories ranging from place of care and death to latest trends in different settings, different disease types, costs, quality of care, workforce and public attitudes.

MW 252: "Living wills" need to be completely clear, rules judge

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The man, referred to in court only as XB, communicated his desires with relatives and lawyers through eye movements on a number of occasions. Last November, documentation of the "advance decision" ... was drawn up in front of witnesses... However, another carer questioned whether XB had actually "communicated his agreement" and thereby given consent, the Court of Protection heard. Consequently the carer's employer, an National Health Service trust, applied to the court to ask for clarification on the matter. It is the first such case to come before the court, part of the High Court.

MW 251: Vegetative patient now able to give "thumbs up," fuelling debate over life support

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An affidavit filed with Canada's top court says he's now minimally conscious, and doctors' reports say he can "voluntarily control" certain behaviours – suggesting he may be aware but trapped in a paralyzed body. This new diagnosis seems certain to inflame an already divisive ethical debate about who decides to withdraw life support. And it raises the discomfiting notion – the stuff of relatives' nightmares – of a patient being aware but unable to communicate when the machines are turned off. The case before the Supreme Court of Canada was begun by two doctors from Sunnybrook Health Sciences Centre, Brian Cuthbertson and Gordon Rubenfeld, who saw no medical purpose in keeping Mr. Rasouli on life support and proposed shifting him to palliative care.

MW 250: Pulmonary rehabilitation and palliative care in COPD: Two sides of the same coin?

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Both utilize a multidisciplinary team that focuses on the specific needs of the individual patient. Care in both is goal defined and includes relief of symptoms and improvements in functional status and quality of life. Pulmonary rehabilitation is commonly given in a specific setting, such as a hospital-based outpatient setting, while palliative care is often hospital based, with its services extending into the home setting in the form of hospice. Components of pulmonary rehabilitation and palliative care should be administered as part of good medical care. Both pulmonary rehabilitation and palliative care are currently underutilized in the respiratory patient, and often provided relatively late in the patient's clinical course.

MW 249: Comfort measures only: Agreeing on a common definition through a survey

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The authors aimed at understanding what doctors understand as CMO (176 physicians responded to the survey). They asked them about the moment in the patient care timeline when to use it and what degree of respiratory support, laboratory draws, antibiotic therapy, level of care, and code status should be a part of it. Disparities in responses were the norm, and common defining characteristics were the exception.

MW 248: Many medical tests and procedures aren't needed – doctors' groups

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The initiative, coordinated by the foundation affiliated with the American Board of Internal Medicine, will initially focus on 45 medical services – five each produced by nine different doctor-specialty societies. It will later add future lists from other specialties. "We're not saying they should never be done, we're saying these are often unnecessary, and therefore the patients should ask the doctor, 'Gee, do I need this?'" says Dr. Christine Cassel [CEO of the foundation]. The campaign, dubbed 'Choosing Wisely,' comes amid intense pressure to rein in growing health care costs. Doctors are trying to take the initiative from insurers."We're better positioned to do this than insurance companies," Cassel says. Many of the examples on the initial lists, such as imaging scans, focus on services and situations that have long drawn concern about overuse.

Extract from Wall Street Journal report

Likely to be touchier is the recommendation ... that doctors should typically steer away from chemotherapy or radiation therapy for patients with solid tumors who aren't doing well, don't qualify for a research trial, haven't responded to multiple past treatments and show no strong evidence that they will benefit from new ones. Instead, such patients may do better with palliative care aimed at easing their pain and other symptoms, says Dr. Lowell Schnipper, the chairman of the society's task force on the cost of cancer care and a professor at Harvard Medical School. The decision has to be up to individual patients and doctors, Schnipper says, but it's important to "help the patient understand that more cancer-directed treatment is not likely to be helpful" under those circumstances. Indeed, research has shown that it may lead to shorter survival times than the palliative therapy, he said.

MW 247: Short-stay, specialist beds in a U.K. teaching hospital as a model to integrate palliative care into the acute hospital culture

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Median pain and distress scores were both seven out of a maximum of 10, reducing to 3.5 and 0 after 48 hours. Median length of stay was five days; 77% of patients were discharged: 32% to home, 26% to a hospice or community hospital, 19% to their original ward for treatment and 23% died in the unit. A unit education ... attracted 600 staff members. Pain and distress were rapidly improved by brief, intense palliative care in a small onsite facility. The pilot programme also influenced the understanding of palliative care in the hospital, demonstrating what it offered patients, family and staff. It demonstrated effective, concurrent working alongside an active disease-management approach, and encouraged collaborative discussions about the goals of care.

MW 246: To tell the truth, the whole truth, may do patients harm: The problem of the nocebo effect for informed consent

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Rigorous research suggests that providing patients with a detailed enumeration of every possible adverse event – especially subjective self-appraised symptoms – can actually increase side effects. Describing one version of what might happen (clinical "facts") may actually create outcomes that are different from what would have happened without this information (another version of "facts"). This essay argues that the perceived tension between balancing informed consent with non-maleficence might be resolved by recognizing that adverse effects have no clear black or white "truth." This essay suggests a pragmatic approach for providers to minimize nocebo responses while still maintaining patient autonomy through "contextualized informed consent," which takes into account possible side effects, the patient being treated, and the particular diagnosis involved.

MW 245: Care homes struggling to meet needs of elderly people, Royal College of Nursing warns

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The Royal College of Nursing (RCN) report says elderly people are being admitted to care homes with increasingly severe and complex care needs, having previously been treated in acute hospitals. The survey of 600 care home nurses found 26% felt they did not have adequate equipment and medical supplies, while 38% said there were not enough full-time registered nurses employed to provide suitable care. Almost half of nurses (48%) said residents were being accepted in a bid to fill vacant places despite concerns about levels of care. The RCN report raised concerns about dwindling morale among care home staff, with carers often paid the minimum wage. The union has recommended a re-evaluation of how funding is allocated to care homes; the introduction of national guidance on staffing levels; a government review of workforce planning in care homes; and regulation of all healthcare assistants.

Extract from Royal College of Nursing report

My only concern is that we are now taking in residents who need palliative and terminal care. This means a lot more input from RNs over the short period and the turnover and workload is much increased without any increase in staffing.

1. Persistent Challenges to Providing Quality Care, Royal College of Nursing, March 2012. Persistent Challenges to Providing Quality Care (1.5 MB)

MW 244: Time to revise the approach to determining cardiopulmonary resuscitation status

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Whenever there is a plausible risk of cardiac arrest, the standard approach is to ask patients or their surrogates about their preferences regarding CPR. However, the very act of asking can suggest to the patient and family that CPR may be beneficial, even when the clinician believes otherwise. Additionally, research in cognitive psychology has revealed that default options are often interpreted as recommendations or guidelines, or as the path of least resistance, and that such default options significantly affect decision making.

MW 243: Innovative prison hospice volunteer conference to bring training to inmate volunteers

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The hospice program at Louisiana State Penitentiary at Angola is one of the leading programs in the nation that serves as a model for others. The prison hospice volunteer conference will allow additional prison hospice programs to learn the skills and processes that have been carefully developed at Angola. Louisiana currently has inmate hospice volunteer programs operating within five correctional facilities in Louisiana and one inmate hospice volunteer program operating at Mississippi State Prison in Parchman, Mississippi.

N.B. Media Watch, as a general rule, does not note upcoming events. It is beyond the scope of the weekly report. An exception was drawn in the case of the conference notice above given its unique focus.

MW 242: Rising to the challenge of palliative care for non-malignant disease

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Initially, many services had regular input from an oncologist. The nursing component of palliative care also has a strong oncology background, and still does in most countries. Modern palliative care would not exist in its present state without this history, core collaborators and general support from oncology. Palliative care is not a neat predetermined package, even in cancer care where advanced incurable illness can usually be identified. Rather, it consists of components that need to be adapted according to the individual situation. It follows that we need to understand the components of the individual case and, in particular, the fundamentals of the disease process. Just as modern palliative care developed under the umbrella of oncology, the widespread development of non-malignant palliative care can only be achieved by a close, meaningful collaboration with specialists in the various non-malignant disease areas.

MW 241: A bioethicist and a journalist discuss end-of-life care

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One of them was from Daniel Callahan, cofounder of the Hastings Center, who was interviewed in the article. Callahan, who has been writing about end-of-life issues for more than 40 years, was so impressed by the article that he proposed to Krieger that they "reverse roles" – he would interview her about her article and, particularly, the response that it got. "I would like to ask you, on looking back, at what point should the life-sustaining efforts have been stopped," he told her. "It was as if people just wanted permission to talk about dying," she told Callahan. "I opened the door." The interview, which includes Krieger's advice to people in a situation similar to the one she described, appears in Bioethics Forum.2

1. "The cost of dying: It's hard to reject care even as costs soar," San Jose Mercury News, 6 February 2012 (noted in Media Watch dated 13 February 2012).

2. "The trial of 'Death by Medicine': An interview with Lisa Krieger," Bioethics Forum, The Hastings Center, 13 February 2012.

MW 240: The cost of dying: It's hard to reject care even as costs soar

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That's the price of a home for a struggling family. Enough to put a future doctor through medical school. Hundreds of prenatal visits. Thousands of vaccinations. My father's story – the final days of a frail 88-year-old with advancing dementia at the end of a long and rewarding life – poses a modern dilemma: Just because it's possible to prolong a life, should we? It's a story of people doing their best in a system that's built to save our loved ones. And it's a reminder of the impossibility, during a crisis, to assess costs and benefits that aren't at all obvious. This was the lesson of my father's passing: It is easy to get quick access to world-class treatment. It's much harder to reject it.

MW 239: It is "too late" or is it? Bereaved family member perceptions of hospice referral when their family member was on hospice for seven days or less

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In contrast, when families stated that referral was "too late," their reasons were centered on concerns with the health care providers' role in decision making, with the leading concerns being inadequate physician communication, not recognizing the patient as dying, or problematic hospice delays in referral from the nursing home or home health agency. Despite the patient refusing an earlier hospice referral, five family members believed the referral was "too late." Whereas family members identified expected concerns with communication, more than one in three stated an earlier hospice referral was not possible.

MW 238: Why doctors can't predict how long a patient will live

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And after struggling for several years with determining their own patients' prognoses, a group of physicians at the University of California in San Francisco set out to collect and study all the research that had been done on so-called prognostic indexes, tools that help with determining general prognosis in older patients.1 Given the growing use of age-based treatment and preventive care guidelines, the doctors assumed there would be plenty of data to help decide whether, for example, an 80-year-old patient might live long enough to benefit from a colonoscopy, a cancer screening procedure that can have its own set of complications. But they found little. Prognosis was rarely, if ever, alluded to in the most popular medical textbooks and on clinical Web sites used by practicing physicians. Even the widely used medical database PubMed, maintained by the National Library of Medicine, had no specific indexing category for prognosis, making finding any published study on the subject like searching for a book in a library before the Dewey Decimal System. While the researchers were finally able to single out 16 indexes that hold promise in helping doctors predict how long a patient might live, there was "insufficient evidence at this time" to recommend any of them for widespread clinical use.

1. 'Prognostic indices for older adults,' American Medical Association Journal, 2012;307(2):182-192 (noted in Media Watch dated 16 January 2012)

MW 237: Palliative care in Australia: Senate inquiry: The good, bad and the ugly

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Executive director of Palliative Care Council, South Australia, Tracey Watters, believes that the recently announced ... Senate inquiry presents the sector with a "once in a lifetime" opportunity to tell the government all that is good, bad and ugly about the current state of palliative care services. But, she said, if this opportunity is not seized and the government does not hear the real life stories of older people, their families and friends who have been denied access to vital, quality and timely palliative care services – and the sad tales about the consequences – then the palliative care sector will be at a loss. "From a consumer's point of view, there seems to be an inordinate number of barriers to accessing specialist palliative care services," Ms. Watters said. "My worry is that in the growth and development of palliative care as a specialty is almost taking it away from its grass-roots [objective], which is to care for people with a terminal illness and help them make use of their time until they die."

MW 236: The need for safeguards in advance care planning

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Patients often do not understand their decisions or they may change their mind without changing their advance care directives. Likewise, concordance between patients' wishes and the understanding of the physicians and surrogate decision makers who need to represent these wishes is disappointingly poor. A few recent reports show encouraging outcomes from advance care planning, but most studies indicate that the procedure is ineffective in protecting patients from unwanted treatments and may even undermine autonomy by leading to choices that do not reflect patient values, goals, and preferences. Safeguards for advance care planning should be put in place, such as encouraging physicians to err on the side of preserving life when advance care directives are unclear, requiring a trained advisor to review non-emergent patient choices to limit life-sustaining treatment, training of clinicians in conducting such conversations, and structured discussion formats that first address values and goals rather than particular life-sustaining procedures.

MW 235: Does palliative care have a future in the emergency department? Discussions with attending emergency physicians

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Providers believed that concerns about medicolegal issues impaired their ability to forgo treatments where risks outweigh benefits. Additionally, the culture of emergency medicine – to provide stabilization of acute medical emergencies – was sometimes at odds with the culture of palliative care, which balances quality of life with the burdens of invasive treatments. Some providers also felt it was the primary physician's responsibility, and not their own, to address goals of care. Finally, some providers expressed concern that palliative care consultation was only available on weekdays during daytime hours. Automatic consultation based on pre-determined criteria was suggested as a way to avoid conflicts with patients and family.

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